Monday, April 27, 2009

Bout time!

Okay, this post is long overdue. But in my defense, there has been a lot going on! I'm trying to get moved out of my house in Orem. I've moved in with my friends Colleen and Najee temporarily. Hopefully this will allow me to be able to save up the necessary amount of money to get moved up to Bountiful once school is out. Between working, spending time with Ben and driving up to spend time with Elaina, I've just been too tired to post. Besides, I wanted to share some pictures, and this way I get to post LOTS of them!!! Anyway, we had a wonderful Easter. Ben was sick, so I didn't take him up to see Elaina. I celebrated Easter with her on Saturday and then came home in time to color eggs with Ben and spent Easter day with him. It was very nice.

Elaina has been doing great! She is such a happy girl! She's just full of smiles, and I even get small giggles from her if I tickle her just right! We've started letting her sit up in a high chair for a little bit each day. She likes to lean to the right, so she gets a toy or something soft by her side to help her sit up straight. Friday was the first day, and she only lasted about 1/2 hour before she started to cry and wanted out. The nurses put her back to bed and she fell asleep in minutes. Sitting up is really hard work! Saturday she lasted an hour, but she only made it 45 minutes both Sunday and today. I don't have any pictures of her in the chair yet, they always put her in when I'm not there, but hopefully I'll be able to get a picture some time this week. I took Ben with me on Sunday and it was a great visit. We put Nemo on and they watched it together. Elaina smiled and "talked" (or rather grunted!) through the whole movie. It really is her favorite, she gets so excited at certain parts, she'll kick her legs and then extend them out straight and reach for the tv. It was fun to see both of my kids interacting together. They love each other so much! I had Elaina on my lap and Ben reached over to give her a hug. As he was hugging her, she leaned in and gave him a big wet baby kiss right on the cheek! I think it made his afternoon! Then, as we were getting ready to leave, I put her back in her crib. She rolled to her side, grabbed one of the bars on the crib railing and rolled herself onto her tummy. She just looked at me, like "and what do I do now?", so I rolled her onto her back, and she immediately rolled towards us again. Ben decided that meant that she didn't want us to leave, and I'd have to agree. It's SO hard to leave her! I'm still excited at the prospect of bringing her home soon. She's doing well, and hopefully it will continue!

Well, it's getting late, and my computer takes forever to upload photos, so I will leave you with these! This is what we've been up to!

My pretty little Easter girl!

Sitting with assistance! She looks so pink in this one... :)

Pulling her sock off. They can't put her pulse ox on that foot because she'll pull it off. She actually managed to get her toes in her mouth while I was holding her on Sunday. She seemed very proud of herself when she did it too!

This is my sweet Aunt Janet. She's my Dad's oldest sister. Elaina and I were thrilled that she came to visit!

She's got the "touch". She had Elaina asleep within a few minutes. Elaina just loved being rocked by her!

How sweet, Elaina is just holding onto Janet's hand. It was a wonderful visit!
(Thanks for bringing her Marney! I should have taken some pictures with you too!)

The aides were running behind schedule this day! I got there and she was still in her nightgown with her crazy hair! Too cute!

Such a happy girl! She's reaching for my camera strap. If I'm not careful she grabs it and tries to steal my camera so that she can eat it. :)

Mom and Elaina, having some snuggle time! I love the dress she's wearing with the ladybug. I bought one for her when she first had her g-tube, and I swear this dress runs small, because after it was washed, it didn't fit her. So I rebought it in a size 3T, thinking it would fit for awhile, and it still seems to be a little on the snug side to me. Hmmmm, maybe she's just bigger than I think she is!

Loves with big brother. So sweet!

So Ben loves to hold his sister. He hates that I always take my turn first (what can I say, I miss her too much to hand her over when I first get there! I need to get my kisses in first!) Anyway, I finally gave him his turn and after holding her for about 10 minutes, he said, "Mom, Elaina feels good in my arms! I like how she feels!" He is going to love having her at home!!!

This is my favorite picture of them all! I LOVE her smile! She is so happy to be in Ben's arms! It just melts my heart!

Well, thanks for checking in on us! We're still trucking along and someday soon I'll be able to post more often, because we'll all be under the same roof!
Hollie, Ben and Elaina

Thursday, April 09, 2009

A Light at the end of the Tunnel....

I had a Care Conference at South Davis.


Here's the best part:

Her doctor looked at me and said, "So, when do you want to take her home?"

Time for a BIG Happy Dance!!!!!!!!!!!!!!!

Okay, so I can't take her home just yet, but it's out there. We're discussing it. It's going to happen. She still needs to be cleared by Cardiology and we don't see them until May 27th. In the meantime, I get to start learning her cares (g-tube, etc.), they are going to fine tune her meds, and Elaina will be working more with Early Intervention. If things go as planned, I could have her home in early June! I am SO excited! The best part is that she won't be coming home on Hospice, she'll just be coming home.
Okay, can you tell I'm little excited about this? As long as she continues to be stable. As long as she continues to sat well. As long as she doesn't have any setbacks, she's coming home. I just can't stop saying it! She's gaining weight so well that they are going to cut back her calories. Everything that was talked about in the care conference was positive.

Thank you all so much for your love and support. I am so grateful for a kind and loving Father in Heaven! I am so grateful that He has allowed Elaina to blossom and grow. I know that it is through His Mercy, His Love and His Divine Plan that she is here. I am so grateful for my Savior. What a beautiful Easter season. My thoughts dwell on the beautiful loving gift that the Savior gave us. He suffered for all of us, He knows the pain that Elaina has gone through, as well as the grief that so many us of have felt in our lives. I know that God lives and that He loves us! I am so Grateful that my heart is overflowing!
Hollie, Ben and Elaina

Thursday, April 02, 2009

It was teeth!

Elaina-bug is pointing at......
Her new tooth!! That's right! On the top. In fact, she's cut 2 teeth since I last posted. That brings her total number of chompers up to 3. Two on the bottom and now one on the top. She's still got a little bit of a runny nose and a pretty icky cough, but I'm really blaming it all on teething. Who knows, maybe the other top tooth will decide it wants to make an appearance soon!

Other than some teething grouchies (that's to be expected), Elaina has been doing great! There was some confusion with the nurses on how to administer her feedings, but it finally got worked out and Elaina seems to be tolerating them very well. We went to the GI doctor on Wednesday. He pulled the long tube out and replaced it with a nice mickey button. It's so much nicer to hook her up to for feedings! He said that things looked great and we only needed to come back and see him if she started having problems! Yay Elaina!!!

After we got back from our appointment with GI at Primary Children's, we were able to meet with Early Intervention. Elaina meets with Carole a few times a month for physical, occupational, etc. therapies. When Carole comes in, she also works with the staff to teach them what to do with Elaina so that Elaina is having some type of therapy daily from the nurses, respiratory or Mom! This visit was also our 6 month review. I can't believe that Elaina has been at South Davis for 6 months, holy cow! When we had our evaluation 6 months ago, Carole determined that Elaina was developmentally about 4 months along. This was in all her areas of development. When we evaluated her this time, here's what we came up with:
Gross Motor 4 months old (still)
Fine Motor 9 months old
Cognitive 7 months old
Language 6 months old
Self Help 12 months old
Social/Emotional 7 months old

That all averages up to be about 7 1/2 months old. Very good progress, considering that she's only been without her no-no's for 2 months! Carole gave me some good ideas for "play" time and wants us to start learning some sign language. Elaina doesn't use her voice very much, and when she does it is SUPER quiet. We think that her vocal cords sustained some damage from all the intubations, etc. She is making some coo's and grunts, and I finally heard her giggle the other day, but her language skills are pretty far behind. As of right now, we don't have any appointments up at Primary Children's until the end of May when we have a Cardiology follow up. I'm kind of excited (and scared at the same time) for this appointment. I feel like she's doing so well, but I'm worried to find out otherwise. Oh well, it's too far away to start stressing out now, all I can do is continue to pray that Elaina will get stronger with each passing day. Her saturations have been wonderful. She 's almost always in the 80's (unless her naughty fingers have pulled the canula off!), and she even set her alarm off when I was holding her yesterday because she was at 92! The alarm sounded on and off for about half an hour and then her respiratory therapist decided to change the parameters so that it would stop alarming!

Anyway, that's what happened in our world this past week. Ben is doing great. No more seizures that I've been aware of. He is very anxious for some warm weather. He's an outside kind of boy, and winter makes him very restless. He's got some severe spring fever! I've started my house hunt again in Bountiful. I'm hoping to find something that I can move into by the beginning of June. School is out at the end of May, and I'm pretty wishy washy about transferring Ben to a new school this close to the end of the school year. Part of me wants him to stay in the same school, with the same teacher and friends, but part of me thinks that he'd make new friends quite easily in a new school, even if it is at the end of the year. I guess I'll just have to see what happens and have faith that things will work out the right way.

On a sad note, I learned today that Dr. Hawkins, Elaina's heart surgeon was diagnosed with pancreatic cancer and given 3 months to live. He has resigned his post as Chief of Cardiothoracic Surgery. I will be forever grateful for his abilities and his dedication. He has touched many families and saved many lives. Please keep him and his family in your prayers during this difficult time.

Well, I'm heading to bed now. My eyes don't want to stay open much longer. Thanks for checking in on us!
Hollie, Ben and Elaina